Transcript 7 National Data Bank for Rheumatic Diseases

The Characteristics of a Systemic Lupus Erythematosus (SLE) National Cohort
Kaleb
1,7
Michaud ,
Robert
2
Katz ,
3
Petri ,
4
Alarcón ,
5
Chakravarty ,
6
Goldman ,
Michelle
Graciela S.
Eliza
John
The Systemic Lupus Erythematosus in the Community Study Group.
Frederick
7
Wolfe ,
of Nebraska Medical Center, Omaha, NE; 2Rush Medical Center, Chicago, IL; 3John Hopkins University, Baltimore, MD; 4University of Alabama at
Birmingham, Birmingham, AL; 5Stanford University, Stanford, CA; 6Emory University, Atlanta, GA; 7National Data Bank for Rheumatic Diseases, Wichita, KS
Introduction
5.0
33.0
45.2
41.8
3.3
31.4
43.8
11.7
4.7
68.0
43.2
24.9
11.2
0.4
1.4
16.5
1.4
6000
2000
4000
.04
.06
Semi-annual costs (dollars)
.08
40
0
10
20
SLAQ score
30
40
Distribution of HAQ scores
1
Therapy in SLE
Hydroxychloroquine
Prednisone
Methotrexate
15.8
No treatment
15.0
10.9
Azathioprine
9.2
Mycophenolate
Sulfasalazine
2.7
Leflunomide 2.1
Minocycline 1.2
Cyclophosphamide 1.1
Cyclosporine 0.8
0
20
61.3
.8
48.2
.6
Mean
(N=303)
Self -referred
46.0
22.9
24.1
48003
8812
30
.4
Mean
(N=814)
MD-referred
Age (years)
51.0****
Ethnic minorities (%)
23.3
Disabled (self reported work status) (%) 21.5
Household Income (US dollars)
48814
6-month direct medical costs (US$2004) 8848
Health Conditions
Renal failure (%)
3.8
Hematuria Proteinuria (%)
25.4**
MRC Class 3 dyspnea (%)
38.1*
Depression (Current) (%)
32.8**
Myocardial infarction (lifetime) (%)
6.4**
Measures
Physical component score (SF 36)
32.9
Mental component score (SF 36)
46.5***
SLAQ score
10.5
Symptom intensity scale (0-10)
4.1***
Medications
Hydroxychloroquine (%)
57.4**
Prednisone (%)
49.0
Azathioprine (lifetime) (%)
26.4
Mycophenolate (lifetime) (%)
12.8
Rituximab (lifetime) (%)
1.3
Cyclophosphamide (%)
1.1
Methotrexate (%)
16.3
Leflunomide (%)
2.4
20
SLAQ score
.2
Variable
10
40
Percent
60
80
N=978
Overall, self-referred patients have slightly greater severity on self-report
items. However, when only physician validates SLE patients are
analyzed these difference become very small.
The NDB is an independent, non-profit
research data bank dedicated to
rheumatology and patients with rheumatic
diseases. We invite rheumatologists to join
the NDB and help with this research. Stop
by at Booth 575 for more information.
0
CONCLUSIONS. Self-referred SLE patients are generally similar to MD-referred
patients in this cohort. The most common therapies are hydroxychloroquine and
prednisone. Direct medical costs and work disability are high, and are associated
with illness severity. Patient-based data banks offer another valuable resource for
the study of SLE.
Table 1. Characteristics of Physician
and Self-referred SLE Patients
0
Density
RESULTS. The mean age of the 1,117 participants was 50.7 years and 93.7%
were women. Most (84.0%) received their SLE care from rheumatologists. Work
disability occurred in 22.2% and was more common in those reporting elevated
creatinine odds ratio (OR) 2.7 (95% CI 1.4-5.2), Medical Research Council
(MRC) Class 3 dyspnea OR 3.3 (2.7-5.1), myocardial infarction OR 1.9 (1.1-3.6)
and stroke OR 3.1 (1.3-7.1). The annualized direct medical costs were US $8840,
and 16.3% were hospitalized semiannually. In a subset of 325 patients, the
Systemic Lupus Erythematosus Questionnaire (SLAQ) score was 10.9 (SD 6.9).
Among SLE therapies, use was: hydroxychloroquine 60.3%, prednisone 47.4%,
methotrexate 16.4%, azathioprine 10.6%, mycophenolate 8.9%, leflunomide
2.1%, cyclophosphamide 1.2% and rituximab 1.0%. We compared self-referred
and MD-referred patients for key SLE variables (Table 1). Self-referred patients
were younger, and had slightly more abnormal values for proteinuria/hematuria,
dyspnea, depression and the SF-36 mental component score.
In addition to accepting referrals from physicians, we opened up this
project to self-referral by patients. This is a potentially hazardous decision
as patients may enroll as having lupus but, who, in reality, do not have that
illness. The National Data Bank for Rheumatic Diseases (NDB) tackled
this problem by asking patients for permission to contact their physicians
to validate the diagnosis. In the report that follows, we make use of data
from physician and self referral to describe the characteristics of this
growing data bank and its potential for assessing patient outcomes.
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METHODS. SLE patients were enrolled in the databank beginning in 1998 by
referral from 144 US rheumatologists or by self-referral. Self-referred patients
were informed about this study by lupus publications, internet communications
and physician information. Patients report about their illnesses semiannually, and
critical outcomes are verified by medical records. After self referral, we initiated
diagnosis confirmation by physician contact.
Most data on SLE comes from research conducted in tertiary centers. In
addition, such research tends primarily to use physician and laboratory
data, and pays less attention to patient outcomes. The Systemic Lupus
Erythematosus in the Community (SLEC) had several aims, including
increasing understanding of SLE patient outcomes and tapping into the
large body of SLE that is seen by community physicians such as
community rheumatologists and primary care physicians.
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PURPOSE. Much of what is known about patients with systemic lupus
erythematosus (SLE) comes from tertiary referral centers. SLE patients in the
community are often not captured in research reports because their physicians are
not part of the tertiary network. We have built a database of SLE patients through
physician referral and patient self-enrollment. In this report we investigate the
characteristics and differences between self-referred (N=303) and physician
referred (N=814) participants.
Distribution of SLAQ scores
Density
Abstract
8000
1University
0
1
2
HAQ Disability score-Clinic
3
Conclusions
Self-referred SLE patients are generally similar to MD-referred
patients in this cohort. The most common therapies are
hydroxychloroquine and prednisone. Direct medical costs and work
disability are high, and are associated with illness severity. Patientbased data banks offer another valuable resource for the study of SLE